Seminars in Thoracic and Cardiovascular Surgery: Pediatric Cardiac Surgery Annual
Volume 13, Issue 1 , Pages 3-19 , 2010

Congenital Heart Surgery Databases Around the World: Do We Need a Global Database?

  • Jeffrey Phillip Jacobs

      Affiliations

    • The Congenital Heart Institute of Florida, All Children's Hospital and Children's Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates of Florida (CSAoF), Saint Petersburg and Tampa, FL, USA
    • Corresponding Author InformationAddress correspondence to Jeffrey P. Jacobs, MD, FACS, FACC, FCCP, Department of Surgery, University of South Florida (USF), The Congenital Heart Institute of Florida (CHIF), Cardiac Surgical Associates of Florida (CSAoF), 625 Sixth Ave South, Suite 475, St Petersburg, FL 33701
    • ,
  • Bohdan Maruszewski

      Affiliations

    • The Children's Memorial Health Institute, Department of Cardiothoracic Surgery, Warsaw, Poland
    • ,
  • Hiromi Kurosawa

      Affiliations

    • Heart Institute of Japan, Tokyo Women's Medical University, Tokyo, Japan
    • ,
  • Marshall Lewis Jacobs

      Affiliations

    • Cleveland Clinic Foundation, Cleveland Clinic Lerner School of Medicine, Case Western Reserve University, Cleveland, OH, USA
    • ,
  • Constantine Mavroudis

      Affiliations

    • Cleveland Clinic Foundation, Cleveland Clinic Lerner School of Medicine, Case Western Reserve University, Cleveland, OH, USA
    • ,
  • Francois G. Lacour-Gayet

      Affiliations

    • Children's Hospital at Montefiore, New York, NY, USA
    • ,
  • Christo I. Tchervenkov

      Affiliations

    • The Montreal Children's Hospital of the McGill University Health Centre, Montreal, Quebec, Canada
    • ,
  • Hal Walters III

      Affiliations

    • Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, MI, USA
    • ,
  • Giovanni Stellin

      Affiliations

    • University of Padova Medical School, Padova, Italy
    • ,
  • Tjark Ebels

      Affiliations

    • Groningen University Medical Centre, Groningen, the Netherlands
    • ,
  • Victor T. Tsang

      Affiliations

    • Great Ormond Street Hospital for Children, London, United Kingdom
    • ,
  • Martin J. Elliott

      Affiliations

    • Great Ormond Street Hospital for Children, London, United Kingdom
    • ,
  • Arata Murakami

      Affiliations

    • The University of Tokyo, Tokyo, Japan
    • ,
  • Shunji Sano

      Affiliations

    • Okayama University Graduate School of Medicine and Dentistry, Okayama, Japan
    • ,
  • John E. Mayer Jr

      Affiliations

    • Children's Hospital Boston, Harvard Medical School, Boston, MA, USA
    • ,
  • Fred H. Edwards

      Affiliations

    • The University of Florida, Gainesville and Jacksonville, FL, USA
    • ,
  • James Anthony Quintessenza

      Affiliations

    • The Congenital Heart Institute of Florida, All Children's Hospital and Children's Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates of Florida (CSAoF), Saint Petersburg and Tampa, FL, USA

References 

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  3. Mavroudis C, Jacobs JP. The International Congenital Heart Surgery Nomenclature and Database Project. Ann Thorac Surg. 2000;(suppl):S1–S372
  4. Mavroudis C, Jacobs JP. Congenital Heart Surgery Nomenclature and Database Project: Introduction. Ann Thorac Surg. 2000;(suppl):S1
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  27. Walters HW, Mavroudis C, Tchervenkov CI, et al. Congenital Heart Surgery Nomenclature and Database Project: Double Outlet Right Ventricle. Ann Thorac Surg. 2000;(suppl):S249–S263
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  31. Backer CL, Mavroudis C. Congenital Heart Surgery Nomenclature and Database Project: Vascular Rings, Tracheal Stenosis, and Pectus Excavatum. Ann Thorac Surg. 2000;(suppl):S308–S318
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  33. Rocchini AP. Congenital Heart Surgery Nomenclature and Database Project: Therapeutic Cardiac Catheter Interventions. Ann Thorac Surg. 2000;(suppl):S332–S342
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  42. Maruszewski B, Tobota Z. The European Congenital Heart Defects Surgery Database experience: Pediatric European Cardiothoracic Surgical Registry of the European Association for Cardio-Thoracic Surgery. Semin Thorac Cardiovasc Surg Ped Card Surg Annu. 2002;5:143–147
  43. Lacour-Gayet F. Risk stratification theme for congenital heart surgery. Semin Thorac Cardiovasc Surg Ped Card Surg Annu. 2002;5:148–152
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  47. Jenkins KJ, Gauvreau K. Center-specific differences in mortality: preliminary analyses using the Risk Adjustment in Congenital Heart Surgery (RACHS-1) method. J Thorac Cardiovasc Surg. 2002;124:97–104
  48. Franklin RCG, Jacobs JP, Tchervenkov CI, et al. Report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease: bidirectional crossmap of the short lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. Cardiol Young. 2002;(suppl II):18–22
  49. Franklin RCG, Jacobs JP, Tchervenkov CI, et al. European paediatric cardiac code short list crossmapped to STS/EACTS short list with ICD-9 & ICD-10 crossmapping. Cardiol Young. 2002;(suppl II):23–49
  50. Franklin RCG, Jacobs JP, Tchervenkov CI, et al. STS/EACTS short list mapping to European paediatric cardiac code short list with ICD-9 & ICD-10 crossmapping. Cardiol Young. 2002;(suppl II):50–62
  51. Béland M, Jacobs JP, Tchervenkov CI, et al. The International Nomenclature Project for Paediatric and Congenital Heart Disease: report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young. 2002;12:425–430
  52. Franklin RCG, Jacobs JP, Tchervenkov CI, et al. The International Nomenclature Project for Pediatric and Congenital Heart Disease: bidirectional crossmap of the short lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. Cardiol Young. 2002;12:431–435
  53. Kurosawa H, Gaynor JW, Jacobs JP, et al. Congenital Heart Surgery Nomenclature and Database Project: update and proposed data harvest. Jpn J Thorac Cardiovasc Surg. 2002;50:498–501
  54. Allen SW, Gauvreau K, Bloom BT, et al. Evidence-based referral results in significantly reduced mortality after congenital heart surgery. Pediatrics. 2003;112:24–28
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  56. Lacour-Gayet FG, Clarke D, Jacobs JP, et al. Aristotle Committee The Aristotle score for congenital heart surgery. Semin Thorac Cardiovasc Surg Ped Card Surg Annu. 2004;7:185–191
  57. Béland MJ, Franklin RCG, Jacobs JP, et al. Update from The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young. 2004;14:225–229
  58. Lacour-Gayet FG, Clarke D, Jacobs JP, et al. Aristotle Committee The Aristotle Score: a complexity-adjusted method to evaluate surgical results. Eur J Cardiothorac Surg. 2004;25:911–924
  59. Jacobs JP, Mavroudis C, Jacobs ML, et al. Lessons learned from the Data Analysis of the Second Harvest (1998-2001) of the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database. Eur J Cardiothorac Surg. 2004;26:18–37
  60. Boethig D, Jenkins KJ, Hecker H, et al. The RACHS-1 risk categories reflect mortality and length of hospital stay in a large German pediatric cardiac surgery population. Eur J Cardiothorac Surg. 2004;26:12–17
  61. Welke KF, Jacobs JP, Jenkins KJ. Evaluation of quality of care for congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2005;8:157–167
  62. Jacobs JP, Elliott MJ, Anderson RH, et al. Creating a database with cardioscopy and intra-operative imaging. Cardiol Young. 2005;15(suppl 1):184–189
  63. Jacobs JP, Maruszewski B, Tchervenkov CI, et al. The current status and future directions of efforts to create a global database for the outcomes of therapy for congenital heart disease. Cardiol Young. 2005;15(suppl 1):190–198
  64. Jacobs JP, Lacour-Gayet FG, Jacobs ML, et al. Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. Ann Thorac Surg. 2005;79:1635–1649
  65. Lacour-Gayet F, Clarke DR Aristotle Committee. The Aristotle method: a new concept to evaluate quality of care based on complexity. Curr Opin Pediatr. 2005;17:412–417
  66. Lacour-Gayet F, Jacobs JP, Clarke DR, et al. Performance of surgery for congenital heart disease: shall we wait a generation or look for different statistics?. J Thorac Cardiovasc Surg. 2005;130:234–235
  67. Maruszewski B, Lacour-Gayet F, Monro JL, et al. An attempt at data verification in the EACTS Congenital Database. Eur J Cardiothorac Surg. 2005;28:400–406
  68. Jacobs ML. Editorial comment. Eur J Cardiothorac Surg. 2005;28:405–406
  69. Jacobs JP, Maruszewski B The European Association for Cardio-Thoracic Surgery (EACTS) and The Society of Thoracic Surgeons (STS) Joint Congenital Heart Surgery Nomenclature and Database Committee. Computerized outcomes analysis for congenital heart disease. Curr Opin Pediatr. 2005;17:586–591
  70. Jacobs JP, Jacobs ML, Maruszewski B, et al. Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2005;80:2278–2284
  71. Larsen SH, Pedersen J, Jacobsen J, et al. The RACHS-1 risk categories reflect mortality and length of stay in a Danish population of children operated for congenital heart disease. Eur J Cardiothorac Surg. 2005;28:877–881
  72. Miyamoto T, Sinzobahamvya N, Kumpikaite D, et al. Repair of truncus arteriosus and aortic arch interruption: outcome analysis. Ann Thorac Surg. 2005;79:2077–2082
  73. Jacobs JP, Franklin RCG, Jacobs ML, et al. Classification of the functionally univentricular heart: unity from mapped codes. Cardiol Young. 2006;16(suppl 1):9–21
  74. Jacobs JP, Mavroudis C, Jacobs ML, et al. What is operative mortality? (Defining death in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee). Ann Thorac Surg. 2006;81:1937–1941
  75. Tchervenkov CI, Jacobs JP, Weinberg PM, et al. The nomenclature, definition and classification of hypoplastic left heart syndrome. Cardiol Young. 2006;16:339–368
  76. Jacobs JP, Franklin RCG, Wilkinson JL, et al. The nomenclature, definition and classification of discordant atrioventricular connections. Cardiol Young. 2006;16(suppl 3):72–84
  77. Sinzobahamvya N, Photiadis J, Kumpikaite D, et al. Comprehensive Aristotle score: implications for the Norwood procedure. Ann Thorac Surg. 2006;81:1794–1800
  78. Atrip JH, Campbell DN, Ivy DD, et al. Birth weight and complexity are significant factors for the management of hypoplastic left heart syndrome. Ann Thorac Surg. 2006;82:1252–1259
  79. Al-Radi OO, Harrell FE, Caldarone CA, et al. Case complexity scores in congenital heart surgery: a comparative study of the Aristotle Basic Complexity score and the Risk Adjustment in Congenital Heart Surgery (RACHS-1) system. J Thorac Cardiovasc Surg. 2007;133:865–875
  80. Jacobs JP, Mavroudis C, Jacobs ML, et al. Nomenclature and databases - the past, the present, and the future: a primer for the congenital heart surgeon. Pediatr Cardiol. 2007;28:105–115
  81. Lacour-Gayet F, Jacobs ML, Jacobs JP, et al. The need for an objective evaluation of morbidity in congenital heart surgery. Ann Thorac Surg. 2007;84:1–2
  82. Lacour-Gayet FG, Jacobs JP, Clarke DR, et al. Evaluation of quality of care in congenital heart surgery: contribution of the Aristotle Complexity Score. Adv Pediatr. 2007;54:67–83
  83. Jacobs JP, Anderson RH, Weinberg P, et al. The nomenclature, definition and classification of cardiac structures in the setting of heterotaxy. Cardiol Young. 2007;17(suppl 2):1–28
  84. Jacobs JP, Wernovsky G, Elliott MJ. Analysis of outcomes for congenital cardiac disease: can we do better?. Cardiol Young. 2007;17(suppl 2):145–158
  85. Jacobs JP, Jacobs ML, Mavroudis C, et al. What is operative morbidity? (Defining complications in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee). Ann Thorac Surg. 2007;84:1416–1421
  86. O'Brien SM, Jacobs JP, Clarke DR, et al. Accuracy of the Aristotle Basic Complexity Score for Classifying the Mortality and Morbidity Potential of Congenital Heart Surgery Procedures. Ann Thorac Surg. 2007;84:2027–2037
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  88. Curzon CL, Milford-Beland S, Li JS, et al. Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database. J Thorac Cardiovasc Surg. 2008;135:546–551
  89. Jacobs JP, Haan CK, Edwards FH, et al. Editorial: the rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS database. Ann Thorac Surg. 2008;86:695–698
  90. Jacobs JP. Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. Cardiol Young. 2008;18(suppl 2):1–530
  91. Jacobs JP. Introduction–Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. Cardiol Young. 2008;18(suppl 2):1–37
  92. Jacobs JP, Jacobs ML, Mavroudis C, et al. Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement. Cardiol Young. 2008;18(suppl 2):38–62
  93. Tchervenkov CI, Jacobs JP, Bernier P-L, et al. The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiol Young. 2008;18(suppl 2):63–69
  94. Franklin RCG, Jacobs JP, Krogmann ON, et al. Nomenclature for congenital and paediatric cardiac disease: historical perspectives and The International Pediatric and Congenital Cardiac Code. Cardiol Young. 2008;18(suppl 2):70–80
  95. Jacobs JP, Benavidez OJ, Bacha EA, et al. The nomenclature of safety and quality of care for patients with congenital cardiac disease: a report of the Society of Thoracic Surgeons Congenital Database Taskforce Subcommittee on Patient Safety. Cardiol Young. 2008;18(suppl 2):81–91
  96. Strickland MJ, Riehle-Colarusso TJ, Jacobs JP, et al. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. Cardiol Young. 2008;18(suppl 2):92–100
  97. Jacobs ML, Jacobs JP, Franklin RCG, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery. Cardiol Young. 2008;18(suppl 2):101–115
  98. Jenkins KJ, Beekman RH, Bergersen LJ, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiology. Cardiol Young. 2008;18(suppl 2):116–123
  99. Vener DF, Jacobs JP, Schindler E, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of anaesthesia. Cardiol Young. 2008;18(suppl 2):124–129
  100. LaRovere JM, Jeffries HE, Sachdeva RC, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of critical care. Cardiol Young. 2008;18(suppl 2):130–136
  101. Welke KF, Karamlou T, Diggs BS. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – a comparison of administrative and clinical data. Cardiol Young. 2008;18(suppl 2):137–144
  102. O'Brien SM, Gauvreau K. Statistical issues in the analysis and interpretation of outcomes for congenital cardiac surgery. Cardiol Young. 2008;18(suppl 2):145–151
  103. Hickey EJ, McCrindle BW, Caldarone CA, et al. Making sense of congenital cardiac disease with a research database: the Congenital Heart Surgeons' Society Data Center. Cardiol Young. 2008;18(suppl 2):152–162
  104. Jacobs ML, Jacobs JP, Jenkins KJ, et al. Stratification of complexity: the Risk Adjustment for Congenital Heart Surgery-1 Method and The Aristotle Complexity Score – past, present, and future. Cardiol Young. 2008;18(suppl 2):163–168
  105. Clarke DR, Lacour-Gayet F, Jacobs JP, et al. The assessment of complexity in congenital cardiac surgery based on objective data. Cardiol Young. 2008;18(suppl 2):169–176
  106. Clarke DR, Breen LS, Jacobs ML, et al. Verification of data in congenital cardiac surgery. Cardiol Young. 2008;18(suppl 2):177–187
  107. Morales DLS, McClellan AJ, Jacobs JP. Empowering a database with national long-term data about mortality: the use of national death registries. Cardiol Young. 2008;18(suppl 2):188–195
  108. Bacha EA, Cooper D, Thiagarajan R, et al. Cardiac complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):196–201
  109. Deal BJ, Mavroudis C, Jacobs JP, et al. Arrhythmic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):202–205
  110. Shann KG, Giacomuzzi CR, Harness L, et al. International Consortium for Evidence-Based Perfusion Complications relating to perfusion and extracorporeal circulation associated with the treatment of patients with congenital cardiac disease: Consensus Definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):206–214
  111. Cooper DS, Jacobs JP, Chai PJ, et al. Pulmonary complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):215–221
  112. Welke KW, Dearani JA, Ghanayem NS, et al. Renal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):222–225
  113. Checchia PA, Karamlou T, Maruszewski B, et al. Haematological and infectious complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):226–233
  114. Bird GL, Jeffries HE, Licht DJ, et al. Neurological complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):234–239
  115. Ghanayem NS, Dearani JA, Welke KF, et al. Gastrointestinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):240–244
  116. Walters HL, Jeffries HE, Cohen GA, et al. Congenital cardiac surgical complications of the integument, vascular system, vascular-line(s), and wounds: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(suppl 2):245–255
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PII: S1092-9126(10)00012-8

doi: 10.1053/j.pcsu.2010.02.003

Seminars in Thoracic and Cardiovascular Surgery: Pediatric Cardiac Surgery Annual
Volume 13, Issue 1 , Pages 3-19 , 2010

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